Tag Archives: Dementia

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Unless someone in your family is living with dementia, in which case, can I pour you a drink?

Or perhaps chocolate is your drug of choice. Then let’s belly up to the chocolate bar and drown our sorrows in cocoa and whipped cream. Either way, we need to admit that this is hard.

I’ve been absent from this blog for a while, partly from an abundance of wonderful creative work, and partly from uncertainty about what to share. Mom’s dementia is advancing, and I don’t know which stories to tell, especially at Christmas.

I can write about the things that are working, which is basically a form of cheerleading combined with self-congratulation: “Look! There are things you can do with your loved ones to keep them happy! It’s not so bad after all! You don’t have to despair! See, I’m not despairing!! Aren’t I wonderful?!”

Or I can acknowledge the grief, the dull persistent ache, of realizing that she’s getting more confused, that the disease is gradually taking her in the same direction it took my grandmother — to a place of paranoia and isolation. That route saddens me so much that I quietly avoid it. I work around it. I find ways to redirect her attention to things that make us both happy: songs, games, friends, church, simple sewing projects, nature. And I ask myself, am I really handling her dementia well, or just pretending it isn’t there?

As always, I suppose the truth is somewhere in the middle. It’s true that this is the hardest time of year for her, and by extension, for me. She genuinely believes that her gifts have been stolen. She needs to be reassured, over and over, that they’re all at my house, safely wrapped and ready for Christmas day. (Leaving them at her place just confuses her.) Next week she’ll say that all the gifts she received have been stolen, and take bitter, self-righteous comfort in the belief that at least, like a good little girl, she wrote her thank-you notes.

That’s how it goes, every year now. I hate it.

Yet somehow this year, I’m doing okay. I’ve learned not to draw too much attention to Christmas. We don’t decorate her apartment anymore, because the ornaments trigger her paranoia. We do a little shopping with her and take care of the rest on our own. We visit thrift stores all year round; her favorite thing to do is to buy me “something pretty,” and she never remembers what we’ve bought. This means I can pull out a sweater she bought me weeks ago, and put it under the tree as her gift to me. She won’t know the difference. That’s sad, but somehow freeing. One more step on the path to letting go.

And it’s true that, in this season of high expectations, this season of “Joy to the World,” I sometimes lose sight of the beauty in my little corner. But it’s there.

Last Sunday we took Mom out to lunch after church. She tasted her vegetables and immediately reached for the salt shaker. She took a few bites, reached for the shaker, and salted again. And again. And again. It’s a dementia thing; her sense of taste is changing. The fourth or fifth time, I gently but firmly urged Mom not to salt her food. I told her I was sorry to be bossy, but she’d already done it twice (no need to mention the other three times), and we needed to watch her sodium.

I noticed a woman at the next table looking at me with a concerned expression. I wondered if she thought I was being cruel; why shouldn’t my mother salt her food as much as she wanted? I wondered if I was being judged.

As we were leaving the restaurant, the woman caught my eye and whispered, “Bless you.” I stopped to make sure I’d heard her right.

“Excuse me?”

“Bless you,” she said. “I’ve been there.”

And there it was. The beauty. The sense of connection. The surprising knowledge that even when I feel most alone, a stranger understands.

I’d like to wish you a Merry Christmas or a Happy Holiday, a joyous celebration of whatever brings your family around the table this time of year. But I am letting go of the need, and the obligation, to be merry and happy all the time. Instead, I’ll just offer the secular salutation of my 1960’s childhood:

Greetings of the Season. Season’s Greetings.

In this season of beauty and loss, joy and heartache, I greet you, as the woman in the restaurant greeted me. “Bless you. I’ve been there.”

I have such a good relationship with Mom right now, I have to remind myself that as close as we’ve always been, we have had our share of issues.

A good relationship? In the midst of dementia? Well, in an odd way, yes.

Dealing with her dementia isn’t always easy or pleasant, but it has forced me to let go of a lot of baggage, and that’s good for both of us.

I’m talking about emotional baggage — the issues that inevitably crop up between parents and children, married couples, siblings. Issues like unrealistic expectations, or personality conflicts, or bad parenting, or (in my case) an almost too-perfect parent who never intended to make me feel inadequate, but who was, by her very nature, so good at everything that I sometimes felt I’d never measure up. Poor Mom couldn’t say anything about my housekeeping or my parenting without pushing my buttons: What did she mean by that? Was it a veiled criticism? Why do I care??

Very few of us get through mid-life without some baggage, so if you’re like me, when a family member shows signs of dementia you are already carrying some weight. You get on the dementia train hauling trunks and suitcases of tired old resentments, fully expecting to use them all. Who knows when you might need to reach in and pull out a pet argument or a sensitive point?

But eventually, dementia renders all of that baggage useless. Sure, the person with dementia may argue, but she can’t engage in the subtle tug-of-war you packed in your train case. She can’t play your little power games, at least not verbally. She can’t remember what you said five minutes ago. She can’t even remember what she said five minutes ago.

Cognitively, she is traveling light.

At first this is infuriating. Just when you’re old and wise enough to prove to your parents that you know exactly what you’re doing, they can’t hold onto a thought. I remember realizing that I finally had my house the way I wanted it, the way I knew my mother would love to see it, and she had stopped caring. Her need to feel that she had succeeded in teaching me the domestic arts was completely overrun by her need to feel safe and loved.

This is when, paradoxically, dementia becomes a gift. After a struggle — I won’t lie, this takes time — you begin to see that all the baggage you’ve been lugging around at great expense has stopped serving you. It’s just a burden now: your pride, your need for approval, your righteous indignation; all are worthless in the face of pure, vulnerable human need. You begin to unpack, to shed, to leave things behind in baggage claim. You settle in with your traveling companion. For the first time on your dementia journey, you notice the scenery, and to your surprise, some of it is lovely.

I was visiting a friend in the mountains last summer, and she told me about her father’s last years. “I was not close to my dad,” she said, “and I had a lot of anger. It was hard to be around him sometimes. But once he was really deep in the dementia, I let go of all that. He was so obviously in a different place, and there was no point in digging up the old arguments. I just let him be who he was.”

She justlet him be who he was.

Wouldn’t it be amazing if we could do that for everyone with dementia? For everyone, period?

Sometimes I think Mom’s dementia is my teacher, helping me learn to be present, to let go of expectations, to release. By practicing with her, maybe I can learn to travel more lightly with all my fellow humans.

I lost my temper with Mom today, but she doesn’t know it, because I’ve learned to keep these things to myself. So it can be our little secret. Okay?

Here’s how it happened.

Mom believes, every single day, that things have been stolen from her. This is a fairly typical symptom of dementia, and it long ago stopped surprising me. The good news is that most days, nothing is actually missing. She believes a basket of clean laundry has been stolen – she’s absolutely sure of this – but the basket is there in her closet, and the clothes are either in her drawers or in my dryer.

My sister and I don’t point out anymore that she’s wrong. That would be cruel. We validate her feelings: Oh, Mom, that’s awful. You must be so upset. This approach allows her to save face, and us to save our breath. Her reality is reality; there’s no point in arguing.

And when you think about it, people with dementia are experiencing loss. My insightful sister pointed out years ago that the missing laundry is a metaphor. Mom is missing something: not clothing, but something equally personal. She’s missing her sense of control, her belief that everything is in place. Parts of her brain have actually been stolen, embezzled by the firm of Plaque and Tangle, LLC.

There are days, however, when actual physical items disappear: usually her hearing aid, glasses, or room key. I keep spares of all three, because these are not things she can easily do without. After angrily denouncing the staff of her assisted living for stealing her belongings, she agrees to use the spare. And here’s the kicker: within a few days, the missing item turns up. I go to visit and see that the original hearing aid is in her ear, she’s wearing her regular glasses, or the key is in its accustomed basket on the bookcase. I do a little sleuthing to recover the back-up item, and whisk it away to my house. Mom never once says – or even realizes – that everything’s back to normal.

You see what’s happening, right? She’s hiding things. This, too, is typical of dementia. She probably puts these crucial items someplace safe, someplace where a thief won’t find them, and then loses track of them herself. Or, more infuriating, she may actually hide them in order to test us. Will we believe her when she says they’ve been stolen? Will we take her seriously? Or will we dismiss her as a crazy old woman?

I don’t believe for a minute that Mom is doing this consciously, but I think she might be doing it. As surely as a three-year-old with icing on her chin will deny eating the last cupcake, an 89-year-old with dementia will do whatever it takes to maintain her dignity. The difference is that you can teach a three-year-old that her dishonesty has consequences. The person this far into dementia can’t make that connection (though I will argue passionately that she can still do many other things well). So you have to roll with her fiction. If you want to live peacefully, there is no other choice.

A couple of days ago Mom’s key was missing. Stolen! Taken from her apartment on a basket of clean laundry! And the management refused to make her a new key! The whole spiel. Wow, I consoled, that’s awful. You must be so upset. I brought her over to my house for a truly wonderful visit: we had tea, looked at books, sang songs. When I took her home, I slipped the back-up key, on its bright, plastic-daisy ring, into the pocket of her walker, trusting that within a week or so the old key would turn up.

Sure enough, there it was today in her pocket. The missing key. The stolen property. The loot. Less than forty-eight hours after the crime.

I found the spare key and quietly slipped it into my purse. And for some reason, maybe the slight cold I’m fighting off, I lost my temper. No-one noticed; it was quick, and it all happened inside my head. But it happened. You devil, I thought. You had that key all along. Why do you do this?

There’s no answer. She does it because she has dementia. It was a good reminder of how frustrating this is, how angry I used to be all the time, how hard it must be for people who never get a break from caregiving. How important it is to step back, rest, breathe. Laugh.

Perspective is everything. Usually mine is pretty good. But some days . . . some days it gets hijacked. Stolen. Some days, my good attitude goes out on basket of clean laundry. Thank goodness it tends to show back up, exactly where I left it — if only I can remember where that is.

It’s an explosion of flowering trees, wisteria, and azaleas. The biological imperative to reproduce is on full display: one of my daughter’s professors calls this “plant mating season”. The trees are outdoing each other for attention. The rest of us are VIP guests at Plant World Fashion Week.

Of course there’s pollen, tons of it. Everything that isn’t covered with flowers is buried in yellow dust. And nobody can breathe.

But it’s worth it, especially if you have an 89-year-old mother with dementia. Because beauty never gets old. This time of year I don’t need to come up with any activities to do with her. All we have to do is go for a drive, and she’s happy.

The other day we went to one of our favorite spots, a small lake with a walking trail. We used to walk around it, but now we’re content to sit on one of the swings and take in the view. We become a cheering section for joggers, a welcoming committee for parents and toddlers, and a disappointment to the ducks, who were expecting snacks.

I’ve said this before, but it bears repeating: Mom’s dementia has forced me to slow down and notice all of this. It’s easy to take it for granted, or dismiss it as a nuisance — pollen season, ugh.

Driving through neighborhoods with her, walking oh-so-slowly to a park bench, sitting together without saying a word, I experience spring as a gift. Every flower on these stately trees is new life from very, very old life; life that will continue long after she and I are dead; life that will remind me of her when she’s gone. I can imagine myself in twenty years, on an spring day in Atlanta, sitting outside (on the same swing?) and remembering her. I can already picture the sunshine, the slight nip in the air, the blossoms on the trees, and the thought in my mind:

My husband and I hit the road recently to visit his mother, who has moved into a nursing home. She’s been in assisted living for several years, but she recently fell and broke her hip, so she needs more care.

I haven’t written about my mother-in-law, partly because her life is her own business, and partly because I’ve been focused on my own mother’s journey. But she is a piece of my dementia-care puzzle. She’s one of the many reasons I’m passionate about old people.

My “other mother” Charlotte has been part of my life since I was 13. My husband and I grew up on the same street, and one of our earliest dates was baking cookies in this woman’s kitchen.

With a degree in fashion design, Charlotte was an accomplished seamstress (her last-minute repair of the best man’s tuxedo pants saved my wedding). She was also a gifted kindergarten and first grade teacher. She could take children who seemed hopelessly lost at school and turn them into readers. Her classroom was a safe, loving place for children from all walks of life – rural farm workers, immigrants, townies – anyone who needed an education in her little corner of Georgia.

Charlotte treasured books. She taught her students to love the feel of a book in their hands, to treat books as almost sacred objects. “Don’t leave that book on the floor!” she’d cry. “Take care of it! Treat it the way you would treat your best friend!” She also adored animals of every kind, and was never without a pet.

This woman now lives with dementia. Her condition is different from my mom’s. Mom almost certainly has Alzheimer’s disease. My mother-in-law’s dementia is probably the result of multiple mini-strokes over the course of decades, one of which left her unconscious for almost twenty-four hours.

She’d like nothing more than to move back into the house she was living in when her cognitive problems began – the same house where my husband and I baked those cookies forty years ago. She’s angry that her house has been sold, angry that life has taken this bizarre turn. Why can’t she go home? Why did we sell her furniture? What have we done with her mother’s silver?

It must be so frustrating for her. It’s certainly frustrating for the people who care for her.

We recently found something that seems to lift her out of the anger for a while (besides pictures of her grandchildren, which have always helped). She still loves books, especially large photo books, the kind you put on your coffee table for a few years and wind up donating to the thrift store — National Geographic books, Life Magazine albums, art museum catalogs, old comic strip collections. And of course, books about animals.

My husband snatches these up from libraries and thrift stores, packs them in a rolling suitcase, and takes them to the nursing home. They bring Charlotte a few moments of joy, a chance to forget her disappointments and lose herself in a good book. I don’t know how much longer she’ll be able to enjoy them – she’s very withdrawn – but for now, they provide a tiny window into a world she loves, a world where books are treasures and she is still the patient woman who taught so many children to read.

My last post was about the value of work for people with dementia. Today I thought I’d start sharing examples of the kinds of work my mom can still do.

Mom used to belong to a group called “Quilting for Others”, which provides warm lap quilts to homeless shelters, senior centers, and other places where there’s a need. She had to give up the group when she moved to Atlanta, but she brought boxes of quilting projects with her. I knew next to nothing about quilting, but I discovered that Mom could teach me, if I had the patience to learn.

At the time I didn’t actually want to learn quilting, and I was finding other things to do with Mom, so I gave a lot of the materials back to her group. But I recently opened a mystery box in my attic and discovered some five-year-old projects that were almost complete. The quilt tops, soft batting, and fabric backing were pinned together. The quilts only needed to be tied and bound. Maybe we could do that.

A word of explanation: Mom’s group “ties” their quilts, as opposed to “quilting” them. Tying a quilt is just what it sounds like — putting strong thread through all three layers at regular intervals, and tying square knots to keep the layers in place.

Guess what? Mom can do this! And she loves it!

She has tied two quilts since I opened that box. At first I tried to plan everything out in advance and put pins where each knot should go. Bad idea; Mom has her own way of working. As soon as I let go of control (life lesson, again), she was happy.

As an actor, I go through regular periods of unemployment, and I always worry that I’ll never work again. Like most artists, I’m sure my last gig really was my last. Between jobs I can easily become discouraged, even depressed if I let it go that far. I try not to let it go that far; life is way too short. Still, I know what it’s like to feel useless. It’s not fun.

Fortunately, I know my life’s work isn’t over. If nobody hires me to act, I will produce a play (I’ve done that). If I can’t raise the money to produce a play, I will volunteer for a theater (I can usher). If nobody wants me to volunteer, I will memorize monologues and recite them on the subway (watch out, commuters). I will work.

But what if I couldn’t? What if there really was no job for me, and I couldn’t create one for myself? What if society didn’t want my services?

My mom has always been useful. In any situation she is ready to help, ready to serve, ready to make a difference. Before she developed dementia, she had a thriving volunteer life. Before that, she had a great marriage, a career, and three decades of child-rearing (her first child was born in 1949, and her last left for college in 1978). She used to tell me that, more than anything, she wanted to die busy.

Feeling useless is her worst nightmare. Unfortunately, she has plenty of opportunities to feel that way. She lives in assisted living, so all her meals and housekeeping are provided. She doesn’t drive (which is a good thing), so she can’t visit the sick or volunteer in nursing homes the way she used to. It’s not a good idea for her to tutor math anymore, although she’d love to do it. She needs simple projects, but her dementia makes it hard for her to plan and execute tasks on her own — things like writing a letter or organizing a photo album, the kinds of things many older adults can still do.

She has access to activities at her assisted living, but they are designed mostly to entertain, and entertainment isn’t the same as engagement. It’s valuable, but it’s clearly not enough, at least not for her.

I was devastated when I began hearing Mom say, after just a month or so in her new home, “I feel so useless. Why am I still here? I’m just taking up space and spending your inheritance. Why don’t I just die?” I wanted to say, “Mom, don’t talk like that! Why are you being so negative?” But slowly, I began to get it. I’ve been there — not to that degree, thank God, but still . . . I know the territory.

So I said, “You’re useful to me. You’re my mommy.” And I thought, “Somebody needs to give this poor woman a job.”

Like me, like all of us, people with dementia need to be useful. They need jobs — ways to participate in the workforce for as long as possible, and then household chores, volunteer work, meaningful tasks that contribute to the community. They need to be needed. Dementia doesn’t have to stand in their way, if the rest of us are willing to rethink our response to the disease.

Thomas Carlyle said, “Work is the grand cure of all the maladies and miseries that ever beset mankind.” My mom’s dementia doesn’t have a cure. But her feelings of uselessness do.

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Welcome!

Hi! I'm Carolyn, an actress, mom, wife, and dabbler in all things artistic. Glad to have you with me on a journey of discovery. I'm blogging about art, life, and how each one changes the other. I invite you to follow along.